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IACC Co-occurring conditions workshop: Lewin Group presentation on co-occurring conditions in autistic children in the U.S.

4 Nov

Anjali Jain of the Lewin group presented on data they have collected from medical records about the prevalence of co-occurring conditions found in autistic children in the U.S.. This presentation was made to the Interagency Autism Coordinating Committee in Sept. 2014. (the original video is here, and the Lewin Group talk started at about timestamp 17:50.  The original has closed captioning).

Some of the most common co-occurring conditions are anxiety and depression. In fact, mental health conditions are found in about 70% of autistics. Similarly, neurological conditions and neurodevelopmental disorders are found in about 70% of autistics. By comparison, GI+nutritional disorders (which include areas like allergies), which get a great deal of attention, are found in about 20% of the autistic population. While large, this is much less common than the 70% rates found for mental health and neurodevelopmental disorders.

Another interesting finding was that autistic children are seen more often for treatment of infectious diseases. If the risk for serious problems from infectious diseases is higher in autistic children, this makes the decision of many autism parents to stop vaccinating their children even more problematic.

The full video (with closed captioning) can be found here:

http://videocast.nih.gov/launch.asp?18636


By Matt Carey

Presentations made to the Interagency Autism Coordinating Committee (IACC)

4 Nov

The U.S. Interagency Autism Coordinating Committee (IACC) holds regular meetings. Each IACC meeting typically has presentations by experts in various fields of autism research and services. Video of the meetings is made available by the NIH. For example the IACC workshop on under recognized and co-occurring conditions in ASD is there. It can be somewhat inaccessible in that the entire meeting is 7 hours long (and so is the video) while each talk was typically 10 minutes. In other meetings the talks have been longer, but it seems to me that some may find it valuable to have access to the individual talks. With that in mind, I have been pulling some of the meeting videos and cutting the talks out and posting to YouTube. I will post these talks as I get time.

The first set will be the epidemiology talks presented at the recent Workshop. One by the Anjali Jain of the Lewin Group, one by Lisa Croen of Kaiser Permanente, one by Isaac Kohane of Harvard University, and one by Daniel Coury of The Ohio State University.

By Matt Carey

Press Release: IACC Reauthorized by Autism CARES Act to Continue Through 2019; HHS Seeks Nominations for Public Membership

1 Oct

Below is a press release about the nomination process for the next Interagency Autism Coordinating Committee (IACC).  Note: I served as a public member to the previous IACC but my comments here and elsewhere are my own.

IACC Reauthorized by Autism CARES Act to Continue Through 2019; HHS Seeks Nominations for Public Membership (PDF – 94 KB)

On August 8, 2014, President Obama signed the Autism Collaboration, Accountability, Research, Education and Support (CARES) Act of 2014 (PDF – 256 KB) into law, reauthorizing and expanding the provisions of the Combating Autism Act of 2006 (PDF – 142 KB). New provisions include an increased focus on services and supports, a report on the needs of transitioning youth and adults, and the creation of an Autism Initiative within the Department of Health and Human Services to ensure accountability and ongoing implementation of autism activities across the Department. The new law also reauthorizes the Interagency Autism Coordinating Committee (IACC) to continue until September 30, 2019.

The IACC is a federal advisory committee composed of federal officials and non-federal public members, including autism self-advocates, family members, representatives of private autism organizations, and other public stakeholders. The committee is charged with:

  • Providing annual updates on its Strategic Plan for Autism Spectrum Disorder (ASD) Research, which under the new law will be expanded to include recommendations on services and supports provision;
  • Providing annual updates on its Summary of Advances in ASD Research, a document that summarizes each year’s top ASD research advances;
  • Providing advice and recommendations to the HHS Secretary regarding issues related to ASD;
  • Providing a forum for public discussion of issues related to ASD.

As a federal advisory committee, the IACC does not have authority or appropriations to fund research or services activities, nor to implement federal programs. The IACC’s role is to provide advice that can be used by federal agencies to guide them in setting program and funding priorities, and in developing partnerships with private organizations to address issues of importance to the autism community.

Under the Combating Autism Reauthorization Act of 2011 (covering the period from 2011-2014, PDF – 121 KB), the IACC completed several important projects, including issuing: a letter to HHS Secretary Kathleen Sebelius regarding the need to fill critical gaps in health coverage for people on the autism spectrum; a statement from the Committee on the 2012 update in the ASD diagnostic criteria, which emphasized the importance of basing healthcare and service provision decisions on the need of the individual; and an in-depth 2013 IACC Strategic Plan Update that analyzed progress made over a five-year period (2008-2012) toward implementing the recommendations in the IACC Strategic Plan.

Reflecting on the completion of the current IACC members’ terms on September 30, 2014, IACC Chair Dr. Thomas Insel stated, “We deeply appreciate the contributions and accomplishments of the IACC members who served on the Committee from 2012-2014, and we look forward to working with the new committee, starting in 2015, to address the community’s most pressing ASD research and services needs.”

The Autism CARES Act extends the work of the IACC another 5 years to 2019. The Department of Health and Human Services (HHS) is currently seeking nominations of individuals to serve as non-federal public members on the next iteration of the committee. Members of the public are welcome to nominate individuals with personal and/or professional experience with ASD for public membership on the committee. The Office of Autism Research Coordination (OARC) at the National Institutes of Health, which manages the IACC, will assist the Department in collecting public member nominations. Selections and appointments of public members will be made by the Secretary of Health and Human Services.

For more information on the IACC public member nomination process, please see the 2014 IACC Call for Nominations Announcement.***

The IACC is a federal advisory committee that was created by Congress in an effort to accelerate progress in ASD research and services. The IACC provides advice to the U.S. Department of Health and Human Services on activities related to ASD, and works to improve coordination and communication across the Federal government and work in partnership with the autism community. The Committee is composed of officials from many different federal agencies involved in autism research and services, as well as people with ASD, parents, advocates, and other members of the autism community. The documents and recommendations produced by the IACC reflect the views of the Committee as an independent advisory body and the expertise of the members of the Committee, but do not represent the views, official statements, policies or positions of the Federal government. For more information on the IACC, please visit: www.iacc.hhs.gov.

Interagency Autism Coordinating Committee 2014 Call for Nominations Announcement

1 Oct

Below is the call for nominations announcement for membership in the next IACC.

Note: I served as a public member to the IACC in the last term, but my comments here and elsewhere are my own.

Interagency Autism Coordinating Committee
2014 Call for Nominations Announcement

Introduction

The Interagency Autism Coordinating Committee (IACC), established in accordance with the Combating Autism Act of 2006 (Public Law 109-416, PDF – 49 KB) and reauthorized by the Autism Collaboration, Accountability, Research, Education and Support Act of 2014 (Public Law 113-157, PDF – 211 KB), is open from October 1, 2014- November 14, 2014 for nominations of individuals to serve as non-federal public members on this committee (see press release). The Secretary of Health and Human Services (Secretary), who will make the final selections and appointments of non-federal public members, has directed the Office of Autism Research Coordination (OARC) to assist the Department in conducting an open and transparent nomination process.

Who Is Eligible?

Nominations of new non-federal public members are encouraged, but current non-federal public members may also be re-nominated to continue to serve. Self-nominations and nominations of other individuals are both permitted. Only one nomination per individual is required. Multiple nominations for the same individual will not increase likelihood of selection. The Secretary may select non-federal public members from the pool of submitted nominations and other sources as needed to meet statutory requirements and to form a balanced committee that represents the diversity within the autism spectrum disorder (ASD) community. Those eligible for nomination include leaders or representatives of major ASD research, advocacy and service organizations, parents or guardians of individuals with ASD, individuals on the autism spectrum, healthcare and service providers, educators, researchers and other individuals with professional or personal experience with ASD. In accordance with White House Office of Management and Budget guidelines (FR Doc. 2014–19140), federally-registered lobbyists are not eligible.

Responsibilities of Appointed Non-Federal Public Members

As specified in the Committee’s authorizing statute (section 399CC of the Public Health Service Act, 42 U.S.C. 280i-2, as amended), the Committee will carry out the following responsibilities: (1) monitor autism spectrum disorder research, and to the extent practicable, services and support activities, across all relevant Federal departments and agencies, including coordination of Federal activities with respect to autism spectrum disorder; (2) develop a summary of advances in autism spectrum disorder research related to causes, prevention, treatment, early screening, diagnosis or ruling out a diagnosis; interventions, including school and community-based interventions, and access to services and supports for individuals with autism spectrum disorder; (3) make recommendations to the Secretary regarding any appropriate changes to such activities, including with respect to the strategic plan; (4) make recommendations to the Secretary regarding public participation in decisions relating to autism spectrum disorder, and the process by which public feedback can be better integrated into such decisions; (5) develop a strategic plan for the conduct of, and support for, autism spectrum disorder research, including, as practicable, for services and supports, for individuals with an autism spectrum disorder and the families of such individuals, which shall include (A) proposed budgetary requirements; and (B) recommendations to ensure that autism spectrum disorder research, and services and support activities to the extent practicable, of the Department of Health and Human Services and of other Federal departments and agencies are not unnecessarily duplicative; and (6) submit to Congress and the President: (A) an annual update on the summary of advances; and (B) an annual update to the strategic plan, including any progress made in achieving the goals outlined in such strategic plan.

Committee Composition

In accordance with the Committee’s authorizing statute, “Not more than 1/2, but not fewer than 1/3, of the total membership of the Committee shall be composed of non-Federal public members appointed by the Secretary.”

All non-Federal public members are appointed as Special Government Employees for their service on the IACC, of which:

  • At least two such members shall be individuals with a diagnosis of autism spectrum disorder;
  • At least two such members shall be parents or legal guardians of an individual with an autism spectrum disorder; and
  • At least two such members shall be representatives of leading research, advocacy, and service organizations for individuals with autism spectrum disorder.

The Department strives to ensure that the membership of HHS Federal advisory committees is fairly balanced in terms of points of view represented and the committee’s function. Every effort is made to ensure that the views of women, all ethnic and racial groups, and people with disabilities are represented on HHS Federal advisory committees and, therefore, the Department encourages nominations of qualified candidates from these groups. The Department also encourages geographic diversity in the composition of the Committee. Appointment to this Committee shall be made without discrimination on the basis of age, race, ethnicity, gender, sexual orientation, disability, and cultural, religious, or socioeconomic status. Requests for reasonable accommodation to enable participation on the Committee should be indicated in the nomination submission.

Member Terms

Non-Federal public members of the Committee “shall serve for a term of 4 years, and may be reappointed for one or more additional 4-year terms… Any member appointed to fill a vacancy for an unexpired term shall be appointed for the remainder of such term. A member [with a valid appointment] may serve after the expiration of the member’s term until a successor has been appointed.”

Meetings and Travel

“The Committee shall meet at the call of the chairperson or upon the request of the Secretary. The Committee shall meet not fewer than 2 times each year.”

In the years 2008-2014, the IACC held an average of 16 meetings, workshops and phone conferences per year, including full committee, subcommittee, working and planning group meetings, and workshops. Travel expenses are provided for non-federal public Committee members to facilitate attendance at in-person meetings.

Submission Instructions and Deadline

Nominations should include a cover letter of no longer than 3 pages describing the candidate’s interest in seeking appointment to the IACC, including relevant personal and professional experience with ASD, as well as contact information and a current curriculum vitae or resume. Up to 2 letters of support are permitted in addition to the nomination, with a page limit of 3 pages per letter. Please do not include other materials unless requested.

Nominations are due by 12:00 midnight Eastern Friday, November 14, 2014 and may be sent to Dr. Susan Daniels, Director, Office of Autism Research Coordination/NIMH/NIH, 6001 Executive Boulevard, Room 6184, Bethesda, Maryland 20892 by standard or express mail, or via e-mail to IACCPublicInquiries@mail.nih.gov.

More information about the IACC is available at www.iacc.hhs.gov.

Medicaid will start paying for autism therapies

26 Jul

Medicaid will start paying for autism therapies. The news was released at the last IACC meeting and I’ve been trying to work out how best to write it since. Seems pretty straightforward, doesn’t it? Not to take anything away from the person who presented it at the meeting but after a while of hearing things like:

Those categories include: section 1905(a)(6) – services of other licensed practitioners; section 1905(a)(13)(c) – preventive services; and section 1905(a)(10)- therapy services.

I just get saturated with the 1915(a) vs 1915(i) type language.

Here’s the announcement: Clarification of Medicaid Coverage of Services to Children with Autism

Here’s one of the first paragraphs:

The federal Medicaid program may reimburse for services to address ASD through a variety of authorities. Services can be reimbursed through section 1905(a) of the Social Security Act (the Act), section 1915(i) state plan Home and Community-Based Services, section 1915(c) Home and Community-Based Services (HCBS) waiver programs and section 1115 research and demonstration programs.

See what I mean? Take from this “the federal Medicaid program may remburse for services to address ASD”

How did this come to pass? A lot of people have been pressuring medicaid for some time to provide autism services. This includes lawsuits, like this one in Florida (Judge: Florida Medicaid Must Cover Therapy for Autism).

If you listen in or watch the IACC meetings, you know that for the past few years one of the sources of pressure on Medicaid has been from IACC member Idil Abdul. I don’t know if a meeting has gone by where Idil hasn’t talked about the inequities of a system where we say we will give medical support to our disabled poor, but we withhold support for treatments related to their disability. Or, to put it simply: why should kids with private insurance get speech, OT and other services while other kids don’t under medicaid?

People often ask what is the value of the IACC and here is one of those unquantifiable benefits. Idil did what a public representative to a federal committee should do: she informed federal members of the needs of the community. Across the table from her was John O’Brien of Medicare and Medicaid Services. John is a good guy and would often patiently correct some factual errors in what Idil had said. But he had to listen to Idil.

And for those of us who know Idil, when I say “she informed federal members” you have to know that “informed” is a major understatement.

Would this shift in Medicaid policy have happened without Idil? It was a big group effort as I’ve already said. Would it have happened later without Idil? We can’t rerun the experiment.

Just to be clear–this wasn’t an effort of the IACC. This was an effort of a member of the IACC. Made possible by her being on the IACC. It’s an odd distinction, but an important one. The structure congress created of the IACC got Idil’s voice in the right place at the right time.

While on the subject of distinctions: as always, my comments are my own and they do not represent the views of the IACC.


By Matt Carey

More of that vaccine/autism research that doesn’t exist

17 Jul

There are some parents who want research on vaccines and autism. I may not agree that this is the best way to spend our limited resources, but there’s no denying that this group exists and is very vocal. One thing that surprises me is that these parents appear to be unaware of vaccine/autism research that is ongoing. Not just the studies that come out that show us over and over again that autism risk is not increased by vaccines. But other projects. Biology. Studies on regression. And more. I pointed out recently that using NIH Reporter, one can find a number of projects on autism and vaccines or autism and mercury.

But NIH is not the only Federal agency funding autism research. And there are private funders as well. As I mentioned in my previous article, another place to look for funded research projects is the IACC/OARC Autism Spectrum Disorder Research Portfolio Analysis Web Tool as this includes work the various groups represented on the IACC–both Federal and Private. Unfortunately, this tool only has 2008, 2009 and 2010 projects (had the GAO not required OARC to provide a lot of information last year, perhaps this tool would be updated by now. But such is the government.) But, even with this limitation in years, let’s see what projects come up with searches for vaccines or mercury. I’ll give the titles first, and then the abstracts for these projects below.

It’s understandable that parent advocates are not aware of these projects. I’ve written about this before (“What projects are being funded in autism research? Part 1: vaccines and GI issues”) but I think it’s safe to say that parents who believe in the vaccine/autism connection do not frequent Left Brain/Right Brain. There are places on the web that carry that message (for example, the Age of Autism blog and the sites of the organizations that sponsor it). They aren’t telling their constituencies about the ongoing research efforts. As an example, as I was finishing this article, SafeMinds came out with a letter discussing how no work is being performed on vaccines and autism.

Again, this list is only for 2008, 2009 and 2010. More recent projects from NIH were discussed here.

Vulnerability phenotypes and susceptibility to environmental toxicants: From organism to mechanism (funded by Autism Speaks)

Evaluation of the immune and physiologic response in children with autism following immune challenge (funded by Autism Speaks)

Vaccination with regression study (funded by Autism Speaks)

Vaccine safety datalink thimerosol and autism study (Federally Funded)

Analysis of developmental interactions between reelin haploinsufficiency, male sex, and mercury exposure (Funded by Autism Speaks)

MeHG stimulates antiapoptotic signaling in stem cells (Federally funded: DoD)

Etiology of autism risk involving MET gene and the environment (Funded by Autism Speaks)

Epidemiological research on autism in Jamaica (Federally Funded, NIH)

investigation on the potential harmful effects of mercury in the nonhuman primate (Funded by SafeMinds)

Investigating the effect of mercury on ASD, AD and ASD regression (Funded by SafeMinds)

The effect of mercury and neuropeptide triggers on human mast cell release of neurotoxic molecules (Funded by SafeMinds)

Does mercury and neurotension induce mitochondrial DNA release from human mast cells and contribute to auto-immunity in ASD? (Funded by SafeMinds)

Toxicant-induced autism and mitochondrial modulation of nuclear gene expression (Federally Funded: DoD)

Below are the abstracts for these research projects.

Vulnerability phenotypes and susceptibility to environmental toxicants: From organism to mechanism (funded by Autism Speaks)

One hypothesis regarding the association between genetic changes, environmental factors and autism is that many mutations or polymorphisms make the organism more vulnerable to later exposure in some individuals. Called the “vulnerability phenotype”, the Noble lab hypothesizes that one potential unifying theme of the vulnerability phenotype of children with ASD is that they are more oxidized. This elevated oxidation state has been shown to be sufficient to cause dramatic changes in cellular function. In this project, Dr. Noble will test the hypotheses that genetically-based differences in oxidative status are associated with differences in vulnerability to physiological stressors in vitro and in vivo, with even greater increases in vulnerability to combinations of physiological stressors. Specifically, thimerosal and other vaccine adjuvants will be studied. The second part of the study will determine if these effects on a novel regulatory pathway called redox/Fyn/c-Cbl is a necessary mechanistic convergence for increases in vulnerability caused by a more oxidized metabolic status. These results will provide a better understanding of the biochemical effects and mechanisms of possible toxicity of vaccines and vaccine additives. What this means for people with autism: These studies will initially focus on the combination of vaccine additives, but then examine whether a background genetic vulnerability phenotype affects the response to these additives. The results would provide new targets for intervention against the adverse effects of increased oxidative status in children with autism.


Evaluation of the immune and physiologic response in children with autism following immune challenge
(funded by Autism Speaks)

The overall goal of this proposal is to address immune function in children with autism, including the response to vaccine challenge, and how that relates to behavior. Evidence suggests that autism is associated in some cases with altered immune function, but the response of the immune system in children with autism to specific immune challenges, such as vaccines, has not been investigated directly. While it has been reported that some children with autism respond poorly following vaccination with symptoms ranging from rash, diarrhea, irritability, seizures, and loss of skills, no careful, thorough approach has been undertaken to fully characterize this issue, both at the biology and behavior level. We propose to use our current CHARGE (Childhood Autism Risks from Genetics and the Environment) and Autism Phenome Project (APP) study population to address this critical issue. The overall approach would include an examination of the immune response to both viral and bacterial vaccines in children with autism, as compared to typically developing age-matched controls, in real time following vaccination at 5 years of age. Vaccines have advantages for directly studying the immune response as they provide a known, scheduled immune challenge, whose dose is well characterized – making it possible to collect and interpret immune response data at the time that it occurs. Therefore, we think that exposure to an immune challenge with vaccine would result in an increase in inflammation compared to controls in a subpopulation of children with autism. However, we also anticipate that some children will respond to vaccine challenge differently, depending on form of the vaccine, i.e. viral vs. bacterial. Thus, we propose to address the issue of immune function in children with autism through a careful analysis of the immune system, medical and mitochondrial issues, and behavioral response to both viral and bacterial vaccines.

Vaccination with regression study (funded by Autism Speaks)

A major challenge to studying autism with a suspected vaccine-related regression is identifying children with acute regressive-type symptoms following MMR vaccination; there are no specific codes, tests, or procedures that identify this occurrence with a high degree of specificity. This study will explore the Kaiser Permanente electronic databases to ascertain whether we can identify children with regressive type autism and identify the timing of the regression in relation to the period directly following MMR vaccination. In order to see if identification of regressive autism from medical records is possible, the investigators will attempt to identify children vaccinated with MMR who then abruptly undergo a ‘cluster’ of visits, tests, and/or procedures in the time period directly following vaccination. The researchers feel that there may be a number of children who receive a diagnosis (such as ‘prolonged crying’) in the emergency department on the day after vaccination, followed shortly thereafter (1-2 days later) by another set of diagnoses (such as ‘fever’ & ‘irritability’) in the pediatric office or other outpatient department, and then receive either diagnostic or laboratory tests indicating (at least) a moderate degree of severity of concern, such as CT scans, metabolic testing, or referral to neurology. If this study is successful in using medical databases to identify a specific group of children with demonstrable autism-related regression that clearly follows vaccination, it may point to the feasibility of further studies concentrating on this specific population.

Vaccine safety datalink thimerosol and autism study (Federally Funded)

The Thimerosal and Autism Study is a case-control study conducted in three U.S. managed care organizations (MCOs). Data collection began in 2005 and took three years to complete. In this study, children who were diagnosed with autism were matched with control children. The autism diagnosis of the case samples was confirmed by a standardized clinical assessment protocol. Vaccination histories and information on other potential confounding factors were confirmed by reviewing the medical records for all children. In addition, the mothers of both cases and matched controls were interviewed.

Analysis of developmental interactions between reelin haploinsufficiency, male sex, and mercury exposure (Funded by Autism Speaks)

This project will investigate the role of three separate factors in an animal model of autism spectrum disorder: a) genetic susceptibility, b) hormonal environment, and c) possible environmental triggers. A mouse model with a mutation of the reelin gene, implicated in autism spectrum disorders, will be studied after exposure to methyl and ethyl mercury. Both behaviors and neuropathological endpoints will be explored. Finally, the role of endogenous sex hormones will be examined by eliminating the testosterone “surge” around the time of puberty. The individual effects of each will be examined, as well as the interaction of the three components (genetic liability, environmental exposure, hormonal influences) to determine gene x environment interactions. What this means for people with autism: This study will use a unique design to study multiple factors in the etiology of autism spectrum disorder in a mouse model, isolating and combining factors which previously have been implicated in the pathophysiology and behavioral phenotype.

MeHG stimulates antiapoptotic signaling in stem cells (Federally funded: DoD)

This project is a study of the antiapoptotic effect of low concentration of methly mercury and cadmium in cells.

Etiology of autism risk involving MET gene and the environment (Funded by Autism Speaks)

Two independent lines of evidence indicate that the maternal immune system and a functional genetic variant contribute to autism spectrum disorder (ASD) risk. Here, the Van De Water lab will partner with scientists at Vanderbilt University to examine whether these two seemingly unrelated contributions may converge to define a unique ASD susceptibility. Preliminary evidence collected by the Van De Water lab indicates an association between the Mesenchymal epithelial transition factor (MET) gene ‘C’ type, which reduces MET protein expression, and the presence of specific maternal anti-fetal brain autoantibodies. This relationship suggests that this as a pathway for production of the maternal autoantibodies, leading to a gene x environment interaction underlying ASD susceptibility. The next line of experiments will examine the relationship in an even larger sample and assess the functional effect of the MET gene polymorphism on immune cell activity as well as further examine the impact of environmental toxins (including ethyl mercury) on the gene expression-dependent function of maternal immune cells.

Epidemiological research on autism in Jamaica (Federally Funded, NIH)

The prevalence of autism spectrum disorders (ASD) appears to be on the rise in developed countries and has become a serious public health concern. In most developing countries, however, the nature and prevalence of factors associated with ASDs are unknown. The long term goal of this planning project is to develop capacity for conducting large scale population-based ASD studies in Jamaica. First, the diagnostic criteria used in Jamaica and the United States will be compared. Then, questionnaires regarding the demographic and socioeconomic position, occupation, and drinking habits of each child’s parents will be used, and information will be gathered about family history of developmental disorders, family size, birth order of the affected child, and whether the child is taking any medications. An age and sex matched case-control study, including a dietary questionnaire, will also be conducted to investigate whether environmental exposures to mercury, lead, arsenic, and cadmium play a role in autism. Blood and saliva samples will be collected to determine if any DNA polymorphisms that might affect interactions with heavy metals are present in children with ASD. New knowledge of potential environmental risk factors for ASD may arise from this research, thereby reducing physical, psychological, and economic burdens on the child, family, and society and helping parents make decisions about avoiding exposure to environmental contaminants.

An investigation on the potential harmful effects of mercury in the nonhuman primate (Funded by SafeMinds)

An investigation into the effect of mercury on neurons, astrocytes, and microglia on the central nervous system of the nonhuman primate.

Investigating the effect of mercury on ASD, AD and ASD regression (Funded by SafeMinds)

An investigation into the influences of demographics and environmental variables in the development of neurodevelopmental problems such as AD, ASD, and ASD-regression

The effect of mercury and neuropeptide triggers on human mast cell release of neurotoxic molecules (Funded by SafeMinds)

An investigation to determine the pro-inflammatory effects of mitochondrial DNA with and without mast cell triggers.

Does mercury and neurotension induce mitochondrial DNA release from human mast cells and contribute to auto-immunity in ASD? (Funded by SafeMinds)

Further investigation into preliminary data that neurotensin (NT) stimulates mast cell activation and that NT is elevated in young children with autism spectrum disorder.

Toxicant-induced autism and mitochondrial modulation of nuclear gene expression (Federally Funded: DoD)

Autism has been associated with epigenetic changes: Tiny chemical tags in the regulatory regions of genes that affect how genes express themselves by turning them on or off. One gene often decreased in expression in the brain tissue of autistic individuals is MECP2, a gene that governs the expression of genes crucial to brain development. Exposure to environmental pollutants is also thought to play a role in autism. These two phenomena both involve a small cellular organ called mitochondria. The suspect environmental pollutants are toxic to mitochondria, which play a critical role in epigenetics: Pollution exposure can lower the amount of mitochondrial DNA (mtDNA) in a cell, causing an increase in placement of epigenetic tags by DNMT1 that leads to gene silencing. We hypothesize that exposure during pregnancy to pollutants toxic to mitochondria causes a decrease in mtDNA copy number and increased placement of epigenetic tags by DNMT1 on key developmental genes, affecting pathways that have direct roles in the development of autism. We will expose mice, during pregnancy, to selected toxicants and evaluate adult behavior and associated biochemical changes in brain tissue. Valproic acid will be used as a positive control, with saline as a negative control. The environmental pollutants lead, arsenic, cadmium, manganese, mercury, and permethrin will be investigated for their potential to induce autistic behavior changes. Brain tissue will then be used for molecular studies of mtDNA copy number, expression of DNMT1, and alterations to the epigenome on both a genomewide and gene-specific level.


By Matt Carey

Note: I serve as a public member to the IACC. My views here and elsewhere are my own, not those of the Committee.

HHS Announces Appointment of New Public Members to the Interagency Autism Coordinating Committee

2 Jul

The U.S. Interagency Autism Coordinating Committee (IACC) will have two new members when it meets next week. The press release is below. The new members are Wendy Chung from Simons Foundation and Robert Ring from Autism Speaks. The Simons Foundation is the largest non-governmental funder of autism research and previously had a member on the IACC (Dennis Choi). My understanding is that Mr. Choi took a position working with a foreign government and that conflict required him to resign the IACC. Geri Dawson is still on the IACC and started this session working for Autism Speaks. Ms. Dawson has since left Autism Speaks.

For Immediate Release
July 2, 2014

HHS Announces Appointment of New Public Members to the Interagency Autism Coordinating Committee

The Department of Health and Human Services today announced the appointments of Wendy Chung, M.D., Ph.D., and Robert Ring, Ph.D., as public members of the Interagency Autism Coordinating Committee (IACC), a federal advisory Committee composed of federal agency officials and appointed community stakeholders that provides coordination and a forum for public input on issues related to autism spectrum disorder (ASD). Prior to her departure, former HHS Secretary Kathleen Sebelius appointed Dr. Chung, Director of Clinical Research for the Simons Foundation Autism Research Initiative (SFARI), and Dr. Ring, Chief Science Officer of Autism Speaks, to join the IACC in order to provide additional perspectives and expertise to the Committee. Dr. Chung and Dr. Ring serve as leaders within the two organizations that are the largest private funders of autism research in the United States. Both organizations were previously represented on the Committee by individuals who were appointed in 2012, but who have since left or changed affiliation.

Dr. Insel, Chair of the IACC and Director of the National Institute of Mental Health, welcomed the expertise and dedication that Dr. Chung and Dr. Ring bring to the IACC. “Both Dr. Ring and Dr. Chung will be important additions to the Committee, given the depth of their scientific and clinical experience, and their dedication to improving the lives of people on the autism spectrum,” he said.

Dr. Chung, in addition to directing clinical research at SFARI, served as a member of SFARI’s scientific advisory board. Dr. Chung is also the Herbert Irving Associate Professor of Pediatrics and Medicine and Director of Clinical Genetics at Columbia University College of Physicians and Surgeons, where she is the principal investigator for the Simons Variation in Individuals Project (Simons VIP), funded by the Simons Foundation.

Dr. Ring, who has been the Chief Science Officer of Autism Speaks since 2013, also serves as the Chairman of the Board of Delivering Scientific Innovation for Autism (DELSIA), the venture philanthropy arm of Autism Speaks, and leads Autism Speaks’ collaboration with the Simons Foundation to launch the Autism BrainNet, a privately-funded multisite brain banking effort focused on supporting autism research. Dr. Ring previously served as Autism Speaks’ Vice President of Translational Research. He holds adjunct faculty appointments in the Departments of Psychiatry at Mount Sinai School of Medicine and Pharmacology and Physiology at Drexel University College of Medicine. Prior to his work at Autism Speaks, Dr. Ring served as Senior Director and Head of the Autism Research Unit at Pfizer Worldwide Research and Development and worked in the area of psychiatric drug discovery at Wyeth Research.

These two new members of the Committee will serve for the remaining months of IACC activity under the Combating Autism Reauthorization Act of 2011, which will expire on September 30, 2014. If reauthorized, the IACC will be open for nominations of new potential public members in late 2014.


By Matt Carey

Autism CARES Act passes Senate HELP Committee

26 Jun

The U.S. Senate Health, Education, Labor and Pensions (HELP) Committee met today to review the proposed Autism CARES Act. According to The Hill, the bill passed the committee and will move on to the full Senate for vote (Senate panel advances autism research bill)

The Senate Health, Education, Labor and Pensions (HELP) Committee quickly approved legislation Wednesday to reauthorize federal autism research and services for five years.

The bipartisan bill, which now advances to the Senate floor, is identical to a measure passed by the House on Tuesday night and has a strong likelihood of becoming law this summer.

The next steps are–Senate vote, reconciling any differences between the Senate and House versions, and Presidential Signature.

Here’s the US Legislative process:


By Matt Carey

note: I serve as a public member to the IACC (which is part of the legislation discussed above) but all opinions here and elsewhere are my own.

Autism CARES Act passes the House

25 Jun

The Autism Collaboration, Accountability, Research, Education, and Support Act of 2014 has passed the U.S. House of Representatives. The discussion that went on in the House is copied below. If passed into law (i.e. if the Senate votes for it and it is signed by the president), the structure which plans for funding allocations and for coordination of research efforts will continue. Funding levels will increase. One notable change:

The Secretary of Health and Human Services shall designate an existing official within the Department of Health and Human Services to oversee, in consultation with the Secretaries of Defense and Education, national autism spectrum disorder research, services, and support activities

A single individual will be designated to oversee Federal autism activities. Something like the Autism Czar that was discussed when Mr. Obama was first running for president.

AUTISM COLLABORATION, ACCOUNTABILITY, RESEARCH, EDUCATION, AND SUPPORT
ACT OF 2014

Mr. PITTS. Mr. Speaker, I move to suspend the rules and pass the bill
(H.R. 4631) to reauthorize certain provisions of the Public Health
Service Act relating to autism, and for other purposes, as amended.
The Clerk read the title of the bill.
The text of the bill is as follows:

H.R. 4631

Be it enacted by the Senate and House of Representatives of
the United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

This Act may be cited as the “Autism Collaboration,
Accountability, Research, Education, and Support Act of
2014” or the “Autism CARES Act of 2014”.

SEC. 2. NATIONAL AUTISM SPECTRUM DISORDER INITIATIVE.

(a) In General.–The Secretary of Health and Human Services
shall designate an existing official within the Department of
Health and Human Services to oversee, in consultation with
the Secretaries of Defense and Education, national autism
spectrum disorder research, services, and support activities.
(b) Duties.–The official designated under subsection (a)
shall–
(1) implement autism spectrum disorder activities, taking
into account the strategic plan developed by the Interagency
Autism Coordinating Committee under section 399CC(b) of the
Public Health Service Act (42 U.S.C. 280i-2(b)); and
(2) ensure that autism spectrum disorder activities of the
Department of Health and Human Services and of other Federal
departments and agencies are not unnecessarily duplicative.

SEC. 3. RESEARCH PROGRAM.

Section 399AA of the Public Health Service Act (42 U.S.C.
280i) is amended–
(1) in subsection (a)(1), by inserting “for children and
adults” after “reporting of State epidemiological data”;
(2) in subsection (b)(1)–
(A) by striking “establishment of regional centers of
excellence” and inserting “establishment or support of
regional centers of excellence”; and
(B) by inserting “for children and adults” before the
period at the end;
(3) in subsection (b)(2), by striking “center to be
established” and inserting “center to be established or
supported”; and
(4) in subsection (e), by striking “2014” and inserting
“2019”.

SEC. 4. AUTISM INTERVENTION.

Section 399BB of the Public Health Service Act (42 U.S.C.
280i-1) is amended–
(1) in subsection (b)(1), by inserting “culturally
competent” after “provide”;
(2) in subsection (c)(2)(A)(ii), by inserting “(which may
include respite care for caregivers of individuals with an
autism spectrum disorder)” after “services and supports”;
(3) in subsection (e)(1)(B)(v), by inserting before the
semicolon the following: “, which

[[Page H5689]]

may include collaborating with research centers or networks
to provide training for providers of respite care (as defined
in section 2901)”;
(4) in subsection (f), by striking “grants or contracts”
and all that follows through “for individuals with” and
inserting “grants or contracts, which may include grants or
contracts to research centers or networks, to determine the
evidence-based practices for interventions to improve the
physical and behavioral health of individuals with”; and
(5) in subsection (g), by striking “2014” and inserting
“2019”.

SEC. 5. INTERAGENCY AUTISM COORDINATING COMMITTEE.

Section 399CC of the Public Health Service Act (42 U.S.C.
280i-2) is amended–
(1) in subsection (b)–
(A) in paragraph (1)–
(i) by striking “and annually update”; and
(ii) by striking “intervention” and inserting
“interventions, including school and community-based
interventions”;
(B) by striking paragraph (2);
(C) by redesignating paragraph (1) as paragraph (2), and
inserting before such redesignated paragraph the following:
“(1) monitor autism spectrum disorder research, and to the
extent practicable services and support activities, across
all relevant Federal departments and agencies, including
coordination of Federal activities with respect to autism
spectrum disorder;”;
(D) in paragraph (3), by striking “recommendations to the
Director of NIH”;
(E) in paragraph (4), by inserting before the semicolon the
following: “, and the process by which public feedback can
be better integrated into such decisions”; and
(F) by striking paragraphs (5) and (6) and inserting the
following:
“(5) develop a strategic plan for the conduct of, and
support for, autism spectrum disorder research, including as
practicable for services and supports, for individuals with
an autism spectrum disorder and the families of such
individuals, which shall include–
“(A) proposed budgetary requirements; and
“(B) recommendations to ensure that autism spectrum
disorder research, and services and support activities to the
extent practicable, of the Department of Health and Human
Services and of other Federal departments and agencies are
not unnecessarily duplicative; and
“(6) submit to Congress and the President–
“(A) an annual update on the summary of advances described
in paragraph (2); and
“(B) an annual update to the strategic plan described in
paragraph (5), including any progress made in achieving the
goals outlined in such strategic plan.”;
(2) in subsection (c)–
(A) in paragraph (1)–
(i) by striking the paragraph designation, the heading, and
the matter preceding subparagraph (A) and inserting the
following:
“(1) Federal membership.–The Committee shall be composed
of the following Federal members–”;
(ii) in subparagraph (C)–

(I) by inserting “, such as the Administration for
Community Living, Administration for Children and Families,
the Centers for Medicare & Medicaid Services, the Food and
Drug Administration, and the Health Resources and Services
Administration” before the semicolon at the end; and
(II) by adding at the end “and”;

(iii) in subparagraph (D)–

(I) by inserting “and the Department of Defense” after
“Department of Education”; and
(II) by striking at the end “; and” and inserting a
period; and

(iv) by striking subparagraph (E);
(B) in paragraph (2)–
(i) in the paragraph heading, by striking “Additional”
and inserting “Non-federal”;
(ii) in the matter preceding subparagraph (A), by striking
“Not fewer than 6 members of the Committee, or 1/3 of the
total membership of the Committee, whichever is greater” and
inserting “Not more than \1/2\, but not fewer than 1/3, of
the total membership of the Committee”;
(iii) in subparagraph (A), by striking “one such member
shall be an individual” and inserting “two such members
shall be individuals”;
(iv) in subparagraph (B), by striking “one such member
shall be a parent or legal guardian” and inserting “two
such members shall be parents or legal guardians”; and
(v) in subparagraph (C), by striking “one such member
shall be a representative” and inserting “two such members
shall be representatives”; and
(C) by adding at the end the following:
“(3) Period of appointment; vacancies.–
“(A) Period of appointment for non-federal members.–Non-
Federal members shall serve for a term of 4 years, and may be
reappointed for one or more additional 4-year terms.
“(B) Vacancies.–A vacancy on the Committee shall be
filled in the manner in which the original appointment was
made and shall not affect the powers or duties of the
Committee. Any member appointed to fill a vacancy for an
unexpired term shall be appointed for the remainder of such
term. A member may serve after the expiration of the member’s
term until a successor has been appointed.”;
(3) in subsection (d)–
(A) by striking paragraph (2); and
(B) by redesignating paragraphs (3) and (4) as paragraphs
(2) and (3), respectively; and
(4) in subsection (f), by striking “2014” and inserting
“2019”.

SEC. 6. REPORTS.

Section 399DD of the Public Health Service Act (42 U.S.C.
280i-3) is amended–
(1) in the section heading, by striking “report” and
inserting “reports”;
(2) in subsection (b), by redesignating paragraphs (1)
through (9) as subparagraphs (A) through (I), respectively,
and realigning the margins accordingly;
(3) by redesignating subsections (a) and (b) as paragraphs
(1) and (2), respectively, and realigning the margins
accordingly;
(4) by inserting after the section heading the following:
“(a) Progress Report.–”;
(5) in subsection (a)(1) (as so redesignated)–
(A) by striking “2 years after the date of enactment of
the Combating Autism Reauthorization Act of 2011” and
inserting “4 years after the date of enactment of the Autism
CARES Act of 2014”;
(B) by inserting “and the Secretary of Defense” after
“the Secretary of Education”; and
(C) by inserting “, and make publicly available, including
through posting on the Internet Web site of the Department of
Health and Human Services,” after “Representatives”; and
(6) in subsection (a)(2) (as so redesignated)–
(A) in subparagraph (A), (as so redesignated), by striking
“Combating Autism Act of 2006” and inserting “Autism CARES
Act of 2014”;
(B) in subparagraph (B) (as so redesignated), by striking
“particular provisions of Combating Autism Act of 2006” and
inserting “amendments made by the Autism CARES Act of
2014”;
(C) by striking subparagraph (C) (as so redesignated), and
inserting the following:
“(C) information on the incidence and prevalence of autism
spectrum disorder, including available information on the
prevalence of autism spectrum disorder among children and
adults, and identification of any changes over time with
respect to the incidence and prevalence of autism spectrum
disorder;”;
(D) in subparagraph (D) (as so redesignated), by striking
“6-year period beginning on the date of enactment of the
Combating Autism Act of 2006” and inserting “4-year period
beginning on the date of enactment of the Autism CARES Act of
2014 and, as appropriate, how this age varies across
population subgroups”;
(E) in subparagraph (E) (as so redesignated), by striking
“6-year period beginning on the date of enactment of the
Combating Autism Act of 2006” and inserting “4-year period
beginning on the date of enactment of the Autism CARES Act of
2014 and, as appropriate, how this age varies across
population subgroups”;
(F) in subparagraph (F) (as so redesignated), by inserting
“and, as appropriate, on how such average time varies across
population subgroups” before the semicolon at the end;
(G) in subparagraph (G) (as so redesignated)–
(i) by striking “including by various subtypes,” and
inserting “including by severity level as practicable,”;
and
(ii) by striking “child may” and inserting “child or
other factors, such as demographic characteristics, may”;
and
(H) by striking subparagraph (I) (as so redesignated), and
inserting the following:
“(I) a description of the actions taken to implement and
the progress made on implementation of the strategic plan
developed by the Interagency Autism Coordinating Committee
under section 399CC(b).”; and
(7) by adding at the end the following new subsection:
“(b) Report on Young Adults and Transitioning Youth.–
“(1) In general.–Not later than 2 years after the date of
enactment of the Autism CARES Act of 2014, the Secretary of
Health and Human Services, in coordination with the Secretary
of Education and in collaboration with the Secretary of
Transportation, the Secretary of Labor, the Secretary of
Housing and Urban Development, and the Attorney General,
shall prepare and submit to the Committee on Health,
Education, Labor, and Pensions of the Senate and the
Committee on Energy and Commerce of the House of
Representatives, a report concerning young adults with autism
spectrum disorder and the challenges related to the
transition from existing school-based services to those
services available during adulthood.
“(2) Contents.–The report submitted under paragraph (1)
shall contain–
“(A) demographic characteristics of youth transitioning
from school-based to community-based supports;
“(B) an overview of policies and programs relevant to
young adults with autism spectrum disorder relating to post-
secondary school transitional services, including an
identification of existing Federal laws, regulations,
policies, research, and programs;
“(C) proposals on establishing best practices guidelines
to ensure–
“(i) interdisciplinary coordination between all relevant
service providers receiving Federal funding;
“(ii) coordination with transitioning youth and the family
of such transitioning youth; and

[[Page H5690]]

“(iii) inclusion of the individualized education program
for the transitioning youth, as prescribed in section 614 of
the Individuals with Disabilities Education Act (20 U.S.C.
1414);
“(D) comprehensive approaches to transitioning from
existing school-based services to those services available
during adulthood, including–
“(i) services that increase access to, and improve
integration and completion of, post-secondary education, peer
support, vocational training (as defined in section 103 of
the Rehabilitation Act of 1973 (29 U.S.C. 723)),
rehabilitation, self-advocacy skills, and competitive,
integrated employment;
“(ii) community-based behavioral supports and
interventions;
“(iii) community-based integrated residential services,
housing, and transportation;
“(iv) nutrition, health and wellness, recreational, and
social activities;
“(v) personal safety services for individuals with autism
spectrum disorder related to public safety agencies or the
criminal justice system; and
“(vi) evidence-based approaches for coordination of
resources and services once individuals have aged out of
post-secondary education; and
“(E) proposals that seek to improve outcomes for adults
with autism spectrum disorder making the transition from a
school-based support system to adulthood by–
“(i) increasing the effectiveness of programs that provide
transition services;
“(ii) increasing the ability of the relevant service
providers described in subparagraph (C) to provide supports
and services to underserved populations and regions;
“(iii) increasing the efficiency of service delivery to
maximize resources and outcomes, including with respect to
the integration of and collaboration among services for
transitioning youth;
“(iv) ensuring access to all services necessary to
transitioning youth of all capabilities; and
“(v) encouraging transitioning youth to utilize all
available transition services to maximize independence, equal
opportunity, full participation, and self-sufficiency.”.

SEC. 7. AUTHORIZATION OF APPROPRIATIONS.

Section 399EE of the Public Health Service Act (42 U.S.C.
280i-4) is amended–
(1) in subsection (a), by striking “fiscal years 2012
through 2014” and inserting “fiscal years 2015 through
2019”;
(2) in subsection (b), by striking “fiscal years 2011
through 2014” and inserting “fiscal years 2015 through
2019”; and
(3) in subsection (c), by striking “$161,000,000 for each
of fiscal years 2011 through 2014” and inserting
“$190,000,000 for each of fiscal years 2015 through 2019”.

The SPEAKER pro tempore. Pursuant to the rule, the gentleman from
Pennsylvania (Mr. Pitts) and the gentleman from Texas (Mr. Gene Green)
each will control 20 minutes.
The Chair recognizes the gentleman from Pennsylvania.

General Leave

Mr. PITTS. Mr. Speaker, I ask unanimous consent that all Members may
have 5 legislative days in which to revise and extend their remarks and
insert extraneous materials into the Record on the bill.
The SPEAKER pro tempore. Is there objection to the request of the
gentleman from Pennsylvania?
There was no objection.
Mr. PITTS. Mr. Speaker, I yield myself such time as I may consume.
I rise today, Mr. Speaker, in support of H.R. 4631, the Autism
Collaboration, Accountability, Research, Education, and Support–
CARES–Act of 2014, introduced by Congressman Chris Smith of New
Jersey.
Autism CARES demonstrates our continued effort to address the needs
of children and adults with autism spectrum disorder, ASD.
Thanks to the monitoring done by the Centers for Disease Control and
Prevention, CDC, we know that as many as 1 in 68 children have ASD.
With recent studies showing that ASD can be detected in the first 6
months of life, the screening and diagnosis funded in the bill will
mean early diagnosis and improved health and behavioral outcomes.
Many of these children are now transitioning into adulthood and will
need community-based services to replace those provided by the schools.
As a part of this bill, HHS will be required to study their needs and
available services to identify gaps and make their transition seamless
and productive.
The bill would also fund important research at the National
Institutes of Health to understand and treat ASD and the operation of
the Interagency Autism Coordinating Committee.
I urge my colleagues to support this important legislation, and I
reserve the balance of my time.
Mr. GENE GREEN of Texas. Mr. Speaker, I yield myself such time as I
may consume.
Mr. Speaker, I rise in support of H.R. 4631, the Autism
Collaboration, Accountability, Research, Education, and Support Act of
2014.
Autism spectrum disorder, or ASD, is a developmental disability that
can lead to significant social, communication, and behavioral
challenges.
We still do not know all the causes of autism, and we do not have a
cure, but we do know that early intervention services can improve a
child’s development.
Recent data for the Centers for Disease Control and Prevention show
more children than ever before are receiving an autism diagnosis. This
is due, at least in part, to a broader definition of ASD and better
diagnosis, but we cannot rule out the possibility of a true increase in
the number of Americans with ASD.
Continued Federal support for autism activities at HHS will help us
learn more about the causes of autism. It will help more children
receive early diagnosis and intervention, as well as access to services
that they need throughout their lives.
I want to acknowledge the sponsor of this legislation–Congressman
Smith and Congressman Doyle; the sponsors of the Senate companion
legislation, Senators Menendez and Enzi; and leaders on the Energy and
Commerce Committee and on the Senate Health, Education, Labor, and
Pensions Committee–for making it possible to have a consensus bill
before the House today.
I urge my colleagues to join me in supporting this bill, so we can
send it to the Senate and on to the President for his signature, well
in advance of the September 30 sunset provisions in current law.
Mr. Speaker, I reserve the balance of my time.
Mr. PITTS. Mr. Speaker, at this time, I yield 5 minutes to the
gentleman from New Jersey, Congressman Chris Smith, the distinguished
prime sponsor of the legislation, who has really provided the
leadership on this issue.
Mr. SMITH of New Jersey. I thank the chairman for yielding and thank
him for his strong support, along with Chairman Fred Upton, former
Chairman Henry Waxman, and so many others–Mike Doyle, my good friend
and colleague, who together, since 2000, headed up the Coalition for
Autism Research and Education. We have done everything bipartisan. We
have 91 members in the coalition right now.
I would also like to thank the staff, who have helped us move this
bill and negotiate text, including Gary Andres, Cheryl Jaeger, Brenda
Destro, Jean Roehrenbeck, Katie Novaria, Cate Benedetti, and, of
course, Neil Bradley, and so many others who have been so critical to
this legislation.
Mr. Speaker, previous autism law, including the Combating Autism
Reauthorization Act of 2011, made critical investments–continued by
this bill–that are working to determine the causes of autism spectrum
disorder, identify autistic children as early as possible to begin
treatment, raise critical awareness, and develop new therapies and
effective services.
The latest prevalence data from the Centers for Disease Control and
Prevention, Mr. Speaker, is shocking. One in every 68 American children
are on the autism spectrum, a tenfold increase over the last 40 years.
Boys on the spectrum outnumber girls 5 to 1.
In my home State of New Jersey, one in every 45 children has ASD, the
highest rate in the CDC study.
I would note parenthetically, Mr. Speaker, I have chaired two
congressional hearings on global autism, and this developmental
disability is everywhere–one conservative estimate, 67 million
worldwide.
Looking back, Mr. Speaker, it was two dedicated parents from New
Jersey who helped launch the comprehensive Federal policy we seek to
reauthorize today.
Almost 17 years ago, September 1997, Bobbie and Billy Gallagher of
Brick, New Jersey, and parents of two small autistic children, walked
into my Ocean County office looking for help.
They believed Brick had a disproportionate number of students with
autism and wanted action, especially for their son Austin and daughter
Alana, so I invited CDC and other Federal agencies to Brick for an
investigation, only to learn that prevalence rates were high not only
in Brick, but in nearby communities as well.

[[Page H5691]]

Believing we had a serious spike in prevalence, I introduced the
ASSURE Act, and that was incorporated as title I of the Children’s
Health Act of 2000.
Mr. Speaker, much progress has been made since. Today, the evidence
suggests there is no single cause of autism or type. Genetic risk,
coupled with environmental factors, including advanced parental age,
low birth weight, and prematurity–among other factors–may be
triggers.
Signs of autism in a child usually manifest between 12-18 months,
some as early as 6 months, while some regress after the age of 2, yet
transformative early intervention continues to lag.
According to the IACC:

The clinical reality is that, currently, only about 20
percent of children with ASD are being identified early (by 3
years of age).

That, Members of the House, is not good, and it has got to change.
The research clearly shows that early diagnosis means early
intervention and much better outcomes.
The most recent IACC strategic plan–and I encourage Members to read
it. It is a textbook on how the Federal Government should do anything
when it deals with research. They have pointed out that:

During the past few years, there has been a major
revolution in ASD genetics research.
Research on the potential relationship between the immune
system and ASD has grown considerably, resulting in “major
breakthroughs.”

They go on to say:

Much progress has been made in understanding the prevalence
and biology of conditions that commonly co-occur with ASD,
including epilepsy, sleep disorders, GI disturbances,
attention deficit hyperactivity disorder, and other
psychiatric comorbidities.

They also point out:

Particularly intriguing are the results of prenatal vitamin
intake through supplements and diet, showing a 40 percent
reduction in risk of ASD with prenatal vitamin supplements
taken in the 3 months before or during the first month of
pregnancy.

Daily folic acid is also highly recommended.
Mr. Speaker, there is another issue that this bill seeks to address.
Every year, 50,000 young people on the autism spectrum matriculate to
adulthood and are in the process of losing services.
Jonathan Kratchman, a 16-year-old with Asperger’s from New Jersey,
was the keynote speaker at a Dare to Dream conference at Mercer County
Community College last year. He stated:

I know I can be a great contributor to society when I
graduate. However, I need continuing support to get there.

The SPEAKER pro tempore. The time of the gentleman has expired.
Mr. PITTS. I yield an additional minute to the gentleman.
Mr. SMITH of New Jersey. Mr. Kratchman said:

If you take your high school diploma at age 18, you
automatically lose services from your school district.

Both individuals with autism–like Jonathan–and their parents find
themselves confronted with almost unimaginable challenges, including
loss of school, housing, and then they have job needs.

{time} 1830

We are in the midst of a huge yet largely invisible crisis that begs
serious focus and remedies.
The Autism CARES Act tasks multiple Federal agencies to
comprehensively study and report back to Congress on the special needs
of autistic young adults and transitioning youth.
Additionally, Chairman Upton and Chairman Pitts are in the process of
requesting a comprehensive aging-out GAO report that will include key
stakeholder involvement.
Passage of this bill, Mr. Speaker, is an important investment in a
very important special group of people who, along with their families,
caregivers, and friends, face seemingly endless challenges and
struggles.
I strongly urge Members to support this legislation.
Mr. Speaker, I rise today to urge passage of H.R. 4631, the Autism
Collaboration, Accountability, Research, Education and Support Act of
2014–Autism CARES ACT of 2014.
Mr. Speaker, previous autism law including the Combatting Autism Act
of 2011 made critical investments–continued by this bill–that are
working to determine the causes of autism spectrum disorder (ASD),
identify autistic children as early as possible to begin treatment,
raise critical awareness and develop new therapies and effective
services.
According to the National Institutes of Health (NIH), “ASD is a
range of complex neurodevelopment disorders, characterized by social
impairments, communication difficulties, and restricted, repetitive,
and stereotyped patterns of behavior. Autistic disorder, sometimes
called autism or classical ASD, is the most severe form of ASD, while
other conditions along the spectrum include a milder form known as
Asperger syndrome . . .”
The latest prevalence data from the Centers for Disease Control and
Prevention (CDC) is shocking: 1 in every 68 American children are on
the autism spectrum–a tenfold increase over the last 40 years. Boys on
the autism spectrum outnumber girls 5 to 1.
In my home state of New Jersey, 1 in every 45 children has ASD, the
highest rate in the CDC study.
I’ve chaired two congressional hearings on global autism–and this
developmental disability is everywhere. One conservative estimate: 67
million worldwide.
Looking back, it was two dedicated parents from New Jersey who helped
launch the comprehensive federal policy we seek to reauthorize today.
Almost 17 years ago–September 13, 1997–Bobbie and Billy Gallagher
of Brick, New Jersey and parents of two small children with autism,
walked into my Ocean County district office looking for help. They
believed Brick had a disproportionate number of students with autism
and wanted action especially for their son Austin and daughter Alana.
So I invited CDC and other federal agencies to Brick for an
investigation only to learn that prevalence rates were high not only in
Brick but in nearby communities as well. Believing we had a serious
spike in the prevalence of autism, I introduced H.R. 274–the Autism
Statistics, Surveillance, Research and Epidemiology Act (ASSURE) which
was enacted as Title 1 of the Children Health Act of 2000.
Much progress has been made since. Today, the evidence suggests that
there is no single cause or type of autism. Genetic risk coupled with
environmental factors including advanced parental age, low birth weight
and prematurity among other factors may be triggers. Signs of autism in
a child usually manifest between 12-18 months–some as early as 6
months–while some “regress” after 2.
Yet, transformative early intervention continues to lag. According to
the Interagency Autism Coordinating Committee (IACC): “The clinical
reality is that currently only about 20 percent of children with ASD
are being identified early (by 3 years of age)” and that members of
the House is not good and has got to change. Early diagnosis means
early intervention and better outcomes. IACC says “More needs to be
done to raise awareness in the practitioner community of the current
capabilities and benefits of early, repeated screenings, early
diagnosis, and early intervention.”
Research on autism is showing tremendous promise. The most recent
IACC strategic plan–which is reauthorized for five years by Section
5–is filled with insight and actionable information:
“During the past few years there has been a major revolution in ASD
genetics research. Using the newest molecular and epidemiological
methods, recent data continues to strongly support the role of genes in
ASD, and the understanding of this role has been greatly refined.”
“In infants at high genetic risk for ASD due to having an older
sibling with autism, symptoms of autism begin to emerge as young as 6
months of age in those who later develop ASD. These new findings
suggest that it may someday be possible to screen for children at risk
for ASD before the emergence of the full symptoms of autism and early
enough to facilitate even more effective intervention.”
“Research on the potential relationship between the immune system
and ASD has grown considerably over the past 2 years, resulting in
several major breakthroughs. In the realm of basic developmental
research, immune cells and immune signaling molecules have been
identified as essential for establishing stable connections between
neurons during early brain development.”
“Much progress has been made in understanding the prevalence and
biology of conditions that commonly co-occur with ASD, including
epilepsy, sleep disorders, gastrointestinal (GI) disturbances,
attention deficit hyperactivity disorder, and other psychiatric
comorbidities.”
“The time around conception and during pregnancy are likely the most
important time windows of heightened vulnerability for the development
of the brain with supporting evidence from early reports linking autism
symptoms to maternal ingestion of drugs.”
“Particularly intriguing are the results of prenatal vitamin intake
through supplements and diet, showing a 40 percent reduction in risk of
ASD with prenatal vitamin supplements taken in the 3 months before or
during the first month of pregnancy.”

[[Page H5692]]

“A trend of decreasing ASD risk as mothers consumed greater daily
folic acid intake from foods, vitamins, and supplements in the first
month of pregnancy was also reported.”
Over the past 5 years, progress has been made toward developing tools
and practices for more effective screening and early diagnosis–and I
am pleased that the Committee reports includes language that will
ensure federal agencies pay particular attention to the need to focus
on early diagnosis and intervention in children.
While biological differences in individuals with ASD were
hypothesized earlier, there is now “data demonstrating specific
changes in the genome and epigenome, gene expression, cell structure
and function, brain connectivity, and behavior that have been linked to
the causes and underlying biology of ASD.”
I mentioned Bobbie and Billy Gallagher’s children earlier because
they represent a generation of young men and women who are aging out–
both are now over 21 years old, which means far too much of their
support system no longer exists.
Mr. Speaker, every year 50,000 young people on the autism spectrum
matriculate to adulthood.
Jonathan Kratchman, a 16-year-old with Asperger’s from New Jersey,
was the keynote speaker at a “Dare To Dream Conference” at Mercer
County Community College last year, where he stated: “I know I can be
a great contributor to society when I graduate. However, I need
continuing support to get there… Here is a fast fact. If you take
your high school diploma at age 18, you automatically lose services
from your school district.”
Both individuals with autism, like Jonathan, and their parents find
themselves confronted with almost unimaginable challenges including
loss of school instruction, housing and job needs. We are in the midst
of huge yet largely invisible crisis that begs serious focus and
remedies.
The Autism CARES Act tasks multiple federal agencies to
comprehensively study and report back to Congress on the special needs
of autistic young adults and transitioning youth.
While studies show that young adults with autism appear to fare worse
in employment outcomes–including when compared to young adults with
other types of disabilities–there is evidence that with specialized
support programs employment is feasible even among individuals with
higher support needs.
I’m planning a congressional hearing next month in my global health
committee on employers like software giant SAP which has actively
recruited and hired over 700 young adults on the autism spectrum and
recently told me these diligent young employees are extraordinarily
effective workers.
Well planned transition programs will not only assist families and
help shape a brighter future for individuals with ASD, they are also a
smart investment that will reduce government spending in the long-term.
The University Centers for Excellence in Developmental Disabilities
recently estimated that: “Diverting just one young person into living-
wage employment could save an average of $150,000 in SSI benefits over
their lifetime. According to the Social Security Administration,
transitioning just one half of one percent of current SSDI and SSI
beneficiaries from benefits to self-sustaining employment would save
$3.5 billion in cash benefits over the work-life of those
individuals.”
IACC recently concluded that since 2009, the adult services research
field has made some important advances, including gathering of new data
on the services available across the states, information about how
adults are interacting with the service system, and data on the service
needs of adults on the autism spectrum.
But in light of the severity of the aging out crisis, we must do more
and do it fast and ensure we are providing a comprehensive and thorough
review of available services–and those that need to be established.
Additionally, Chairman Upton and Chairman Pitts are in the process of
requesting a comprehensive autism aging-out GAO report that will
include key stakeholder involvement.
We are making real progress, but we still don’t have all the answers.
Specifically, the Autism Cares Act of 2014 authorizes funding for
each of fiscal years 2015 through 2019 at $22 million for the CDC, $48
million for the Health Resources and Services Administration (HRSA) and
$190 million for the National Institutes of Health (NIH) and IACC
activities–for a total of $1.3 billion.
I especially want to thank Majority Leader Eric Cantor, Chairman Fred
Upton and former Chairman Henry Waxman as well as Chairman Joe Pitts–
all strong and committed friends of persons with autism–for their
critical support of this legislation.
Special thanks to my friend Mike Doyle. Since 2000, Mike and I have
co-chaired the 91 member congressional autism caucus–the Coalition on
Autism Research and Education (CARE).
I am very grateful to the many excellent, professional staff who
played key roles in helping move the bill and negotiate text including
Gary Andres, Cheryl Jaeger, Brenda Destro, Jean Roehrenbeck, Katie
Novaria, Cate Benedetti and of course Neil Bradley.
I also want to express my deep appreciation for the extraordinary
contributions made by Autism Speaks, the Autism Society, the
Association of University Centers on Disabilities and the American
Academy of Pediatrics–all of whom strongly endorse H.R. 4631.
Mr. Speaker, passage of this bill today is an investment in a very
important group of people who, along with their families, caregivers
and friends, face seemingly endless challenges and struggles. I urge
support.
Mr. GENE GREEN of Texas. Mr. Speaker, I yield such time as he may
consume to the gentleman from Pennsylvania (Mr. Doyle), my good friend
and colleague.
Mr. DOYLE. Thank you, Mr. Green, for yielding and for your support of
the Autism CARES Act.
First off, I want to thank my good friend and Autism Caucus cochair
Chris Smith for his leadership and work on this critical legislation
over the past 11 years. It has been a real pleasure and a labor of love
to work with Chris on these issues. He is truly a champion in the
autism community. I look forward to continuing that great working
relationship with him.
Mr. Chairman, it seems that every time new data is released on autism
spectrum disorders, the numbers become more and more troubling. In
fact, the Centers for Disease Control’s most recent data show a
continued rise in autism prevalence rates: 1 in every 68 American
children. That is 1 in 189 girls and 1 in 42 boys.
These are staggering numbers with serious implications for many
aspects of American life. That is why passage of the Autism CARES Act
today is so important: to continue research into the causes of autism,
to educate health care providers and the public, to improve early
diagnosis and intervention, to identify effective treatments, and to
evaluate the types of services available to young adults with ASD. We
can and must do better for the millions of Americans living with ASD
and their families.
Many Federal autism programs were first authorized by the Combating
Autism Act of 2006, which has made a huge difference in the lives of
autistic Americans and their families. Since its inception, Congress
has reauthorized these Federal autism programs twice. Without new
legislation to reauthorize them, the funding for these important
programs will expire on September 30 of this year.
We have made tremendous advances in understanding autism spectrum
disorders, but this progress will be lost if Congress allows these
programs to expire. This is why it is so important that Congress pass
this commonsense, bipartisan, bicameral legislation like the bill that
is before us today.
The autism programs this legislation would reauthorize are vitally
important to many families and individuals across the country. Early
diagnosis and intervention can make a huge difference in an autistic
individual’s life and can have a dramatic impact on the individual’s
family and community as well.
With the prevalence of autism spectrum disorders much higher than we
thought just a few years ago, inaction is simply not an option.
I urge my colleagues to support the Autism CARES legislation.
Mr. PITTS. Mr. Speaker, at this time I yield 1 minute to the
distinguished gentleman from Florida (Mr. Bilirakis), a valued member
of the Health Subcommittee.
Mr. BILIRAKIS. Mr. Speaker, I rise today in support of H.R. 4631, the
Autism CARES Act, of which I am an original cosponsor. I want to
commend a sponsor, Mr. Smith from New Jersey, as well as a Democratic
prime cosponsor, Mr. Mike Doyle from the great State of Pennsylvania,
for sponsoring this bill.
Autism is serious and it does not discriminate. People in all racial,
socioeconomic, and ethnic groups are impacted, Mr. Speaker. Autism
awareness and research is something people from all walks of life can
support.
One in 68 children is diagnosed with autism. That is a disturbing
statistic. This legislation will help direct autism research on a
Federal level. This research is vital, and I am glad my colleagues and
I have come together in a

[[Page H5693]]

bipartisan manner to continue autism research, early identification,
intervention, and education.
I am proud to support this legislation, and I urge my colleagues to
support final passage of this legislation.
Mr. GENE GREEN of Texas. Mr. Speaker, I yield such time as he may
consume to the gentleman from New York (Mr. Engel), my good friend and
desk mate on the Energy and Commerce Committee and the ranking member
of the Foreign Affairs Committee.
Mr. ENGEL. Mr. Speaker, I want to thank my good friend from Texas
(Mr. Gene Green) for yielding me the time. I want to thank my good
friend, Mr. Smith from New Jersey. I have so much respect for his hard
work in doing this. Anyone who knows Chris knows that when he wants
something done, he is tenacious. Mike Doyle has been his really good
partner. We all take pride in this legislation.
I rise to support the Autism Collaboration, Accountability, Research,
Education, and Support Act, or the Autism CARES Act. I am pleased that
we have an opportunity to pass this today.
Autism, as my colleagues have said, affects more than 2 million
individuals and their families across our country. The rate of
diagnosis has climbed dramatically in recent years. Today, 1 out of
every 68 American children is diagnosed with autism spectrum disorder
by the age of 8. That is really shocking. These individuals and their
families are counting on us to pass this bill.
The Autism CARES Act will extend and strengthen the efforts we
established under the Combating Autism Act of 2006 and the Combating
Autism Reauthorization Act of 2011. I was proud to support both of
these bills on the Foreign Affairs Committee, the Energy and Commerce
Committee, and the full House. I am pleased to see that this
legislation will give our autism programs the continued support they
deserve.
With this bill, we will extend Federal autism programs for another 5
years, including vital autism research and prevalence monitoring, as
well as training for medical professionals. This bill will also provide
valuable updates to the law. It will increase coordination across
Federal agencies and improve our understanding of the issues youth and
young adults face as they transition out of school-based services.
These changes will advance our understanding of autism spectrum
disorder and allow us to better assist the millions of Americans it
impacts.
The programs provided for this in bill have traditionally enjoyed
strong bipartisan support in the Energy and Commerce Committee. It
enjoyed strong bipartisan support, as I guess it will as well here,
because this is a strong bipartisan issue.
So I urge my colleagues to continue this commitment by voting for the
Autism CARES Act today.
Mr. PITTS. Mr. Speaker, I yield 1 minute to the distinguished
gentleman from Illinois (Mr. Roskam), one of our distinguished leaders.
Mr. ROSKAM. Mr. Speaker, I thank the gentleman for yielding.
One in 68 is diagnosed with autism, Mr. Speaker, and we have an
opportunity to come alongside those families that are dealing with this
diagnosis by supporting the Autism CARES Act. It is a holistic
approach, one that takes on research, education, early detection, and
intervention for those all across the autism spectrum.
There are so many times that we can get into dollars and cents and
chapter and verse and future savings in all of these things, but think
about it. Beyond all of that is something that is much more important,
and it is this: we can be a part of helping children reach their
potential as adults. It is the desire of every parent to see their
child reach full potential. So we can do that by coming together with
this legislation. Think about the joy that is involved in that.
I am pleased to associate myself with the work of Congressman Smith
in this effort and to be a cosponsor of the Autism CARES Act.
Mr. GENE GREEN of Texas. Mr. Speaker, I have no further speakers, and
I yield back the balance of my time.
Mr. PITTS. Mr. Speaker, I am very pleased to support this very
important bipartisan legislation. I urge all Members to do so, and I
yield back the balance of my time.
Mr. MESSER. Mr. Speaker, I rise in support of H.R. 4631, the Autism
CARES Act, which reauthorizes the Combating Autism Reauthorization Act.
I want to commend my colleague, Representative Chris Smith, for
bringing this measure forward.
Our understanding of autism remains an unsolved puzzle. More children
than ever are being diagnosed with communication and behavior disorders
that lead to a diagnosis of autism.
Though our understanding of autism is limited, what we do know is
that autism affects too many children, strains families, costs too
much, and puts those it afflicts at an educational, professional, and
social disadvantage compared to their peers.
Families with autistic children do everything they can to help their
kids maximize their God-given abilities whatever those may be. But it’s
not always easy especially in a world where many don’t understand the
unique challenges autism presents. Helping these families better
navigate this treacherous world would make a huge difference.
The Autism CARES Act provides federal support for critical autism
research by reauthorizing research programs at the National Institute
of Health, Centers for Disease Control and Prevention and the
Department of Health and Human Services. The bill will help better
coordinate federal autism research and ensure more focused efforts to
maximize the benefits of the resources we invest in such research.
This bill also will begin efforts to determine how best to meet the
needs of young adults with autism as they face the new challenges that
come with being an adult.
These investments are extremely important because autism imposes
tremendous emotional and financial costs on families and economic
impact on the health care system. The investments called for by this
bill will pale in comparison to the personal and financial benefits
they will yield in the future.
Families struggling with autism face challenges many of us can’t
imagine. They need and deserve our help. It is time to commit ourselves
to solving this puzzle today so autism can be prevented, treated, and
cured tomorrow.
I urge all of my colleagues to join me in supporting this bipartisan
measure.
The SPEAKER pro tempore. The question is on the motion offered by the
gentleman from Pennsylvania (Mr. Pitts) that the House suspend the
rules and pass the bill, H.R. 4631, as amended.
The question was taken; and (two-thirds being in the affirmative) the
rules were suspended and the bill, as amended, was passed.
A motion to reconsider was laid on the table.

Updated House version of Autism Collaboration, Accountability, Research, Education, and Support Act of 2014

25 Jun

The US Congress is working to reauthorize the law which authorizes funding allocations for autism research and sets up a structure to advise the government on this research. The House of Representatives released the first proposed bill on May 9. The Senate version was introduced on June 9.

A few quick notes:

1) the House version has changed names from the “Combating Autism Reauthorization Act of 2014” to the “Autism Collaboration, Accountability, Research, Education, and Support Act of 2014” or the “Autism CARES Act of 2014”. This aligns with the Senate version.

2) the list of sponsors has grown significantly (you can see that in the text below)

3) the provision that 4 members of the Interagency Autism Coordinating Committee (IACC) be appointed by congress appears to be gone.

There are likely other changes, but other than the section on the IACC, I did not find them on a first review. The House version appears to be aligning with the Senate version which is an indication that the bills are moving towards approval. Much of the basic structure of the existing law (funding authorization, IACC, etc.) remains and is being updated with more money and a 2019 sunset date.

Changes to the IACC (if I read this correctly) are included in the markup below. Bold indicates added language. Strikethroughs indicate cut language.

(a) Establishment
The Secretary shall establish a committee, to be known as the “Interagency Autism Coordinating Committee” (in this section referred to as the “Committee”), to coordinate all efforts within the Department of Health and Human Services concerning autism spectrum disorder.

(b) Responsibilities In carrying out its duties under this section, the Committee shall—

(1) monitor autism spectrum disorder research, and to the extent practicable services and support activities, across all Federal departments and agencies, including coordination of Federal activities with respect to autism spectrum disorder;

(2) develop and annually update a summary of advances in autism spectrum disorder research related to causes, prevention, treatment, early screening, diagnosis or rule out, intervention, and access to services and supports for individuals with autism spectrum disorder;

(2) monitor Federal activities with respect to autism spectrum disorder;

(3) make recommendations to the Secretary regarding any appropriate changes to such activities, including recommendations to the Director of NIH with respect to the strategic plan developed under paragraph (5);

(4) make recommendations to the Secretary regarding public participation in decisions relating to autism spectrum disorder, and the process by which public feedback can be better integrated into such decisions;

(5) develop and annually update a strategic plan for the conduct of, and support for, autism spectrum disorder research, including proposed budgetary requirements; and

(6) submit to the Congress such strategic plan and any updates to such plan.

(5) develop a strategic plan for the conduct of, and support for, autism spectrum disorder research and services and supports for individuals with an autism spectrum disorder and the families of such individuals, which shall include–

“(A) proposed budgetary requirements; and
“(B) recommendations to ensure that autism spectrum disorder research, services, and support activities of the Department of Health and Human Services and of other Federal departments and agencies are not unnecessarily duplicative; and
“(6) submit to Congress and the President–“(A) an annual update on the summary of advances described in paragraph (2); and
“(B) an annual update to the strategic plan described in paragraph (5), including any progress made in achieving the goals outlined in such strategic plan.”;

Membership changes to the IACC

1) Instead of one seat specified for an autistic, two seats will be specified (there were originally 3 autistics on the current IACC. At least one also was a member of an autism organization)

2) Instead of one seat specified for a parent, two seats will be specified (there are currently at least six parents and one relative on autistics on the IACC. Some fill multiple roles: parent and representative of an autism org or parent and adult autistic).

3) Instead of one seat specified for a representative of an autism organization, two will be specified (the current IACC started with at least five members of autism orgs)

The law specifies what to do to fill a vacancy as well.

[Congressional Bills 113th Congress]
[From the U.S. Government Printing Office]
[H.R. 4631 Reported in House (RH)]

Union Calendar No. 365
113th CONGRESS
2d Session
H. R. 4631

[Report No. 113-490]

To reauthorize certain provisions of the Public Health Service Act
relating to autism, and for other purposes.

_______________________________________________________________________

IN THE HOUSE OF REPRESENTATIVES

May 9, 2014

Mr. Smith of New Jersey (for himself, Mr. Doyle, Mrs. McMorris Rodgers,
Mr. Van Hollen, Mr. Sessions, Mr. Wolf, Mr. Stivers, Mr. Meehan, Mr.
Moran, Mrs. Blackburn, Mr. Miller of Florida, Mrs. Walorski, Mr. Larson
of Connecticut, Ms. Jackson Lee, Mr. Harper, Mr. Lance, Mr. Meadows,
Mr. Marino, Mr. Deutch, Mr. Rooney, Mr. Pompeo, Mr. Aderholt, Mr.
Bachus, Mr. Gibson, Mrs. Miller of Michigan, Mr. Young of Alaska, Mr.
King of New York, Ms. Shea-Porter, Ms. DeLauro, Mr. Murphy of
Pennsylvania, Mr. Fitzpatrick, Mr. Terry, Mr. Kelly of Pennsylvania,
Mr. Yoder, and Mr. Matheson) introduced the following bill; which was
referred to the Committee on Energy and Commerce

June 23, 2014

Additional sponsors: Mr. Roe of Tennessee, Ms. Jenkins, Mr. McGovern,
Mr. Israel, Ms. Slaughter, Mr. Vargas, Mr. David Scott of Georgia, Mr.
Grimm, Mr. Fortenberry, Mr. Bishop of Georgia, Ms. Norton, Ms. Roybal-
Allard, Mr. Ellison, Mr. Carson of Indiana, Mr. Schock, Mr. Daines, Mr.
Quigley, Mrs. Capito, Mr. Huffman, Mr. Fattah, Mr. McIntyre, Mr.
Lipinski, Mr. Peterson, Mr. Bilirakis, Mr. Shimkus, Mr. Roskam, Mr.
Burgess, Mr. Gerlach, Ms. Schwartz, Mr. Holding, Mrs. Carolyn B.
Maloney of New York, Mr. Braley of Iowa, Mr. Schiff, Ms. Kaptur, Mr.
Griffin of Arkansas, Mr. Heck of Nevada, Mr. McKeon, Mrs. McCarthy of
New York, Mr. Carney, Mr. Welch, Ms. Esty, Ms. Eshoo, Mr. Kennedy, Mr.
Sensenbrenner, Mr. Joyce, Mr. Kline, Mr. Walz, Mrs. Bustos, Mr. Holt,
Mr. Barletta, Ms. Bass, and Ms. Duckworth

June 23, 2014

Reported with an amendment, committed to the Committee of the Whole
House on the State of the Union, and ordered to be printed
[Strike out all after the enacting clause and insert the part printed
in italic]
[For text of introduced bill, see copy of bill as introduced on May 9,
2014]

_______________________________________________________________________

A BILL

To reauthorize certain provisions of the Public Health Service Act
relating to autism, and for other purposes.

Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

This Act may be cited as the “Autism Collaboration,
Accountability, Research, Education, and Support Act of 2014” or the
“Autism CARES Act of 2014”.

SEC. 2. NATIONAL AUTISM SPECTRUM DISORDER INITIATIVE.

(a) In General.–The Secretary of Health and Human Services shall
designate an existing official within the Department of Health and
Human Services to oversee, in consultation with the Secretaries of
Defense and Education, national autism spectrum disorder research,
services, and support activities.
(b) Duties.–The official designated under subsection (a) shall–
(1) implement autism spectrum disorder activities, taking
into account the strategic plan developed by the Interagency
Autism Coordinating Committee under section 399CC(b) of the
Public Health Service Act (42 U.S.C. 280i-2(b)); and
(2) ensure that autism spectrum disorder activities of the
Department of Health and Human Services and of other Federal
departments and agencies are not unnecessarily duplicative.

SEC. 3. RESEARCH PROGRAM.

Section 399AA of the Public Health Service Act (42 U.S.C. 280i) is
amended–
(1) in subsection (a)(1), by inserting “for children and
adults” after “reporting of State epidemiological data”;
(2) in subsection (b)(1)–
(A) by striking “establishment of regional centers
of excellence” and inserting “establishment or
support of regional centers of excellence”; and
(B) by inserting “for children and adults” before
the period at the end;
(3) in subsection (b)(2), by striking “center to be
established” and inserting “center to be established or
supported”; and
(4) in subsection (e), by striking “2014” and inserting
“2019”.

SEC. 4. AUTISM INTERVENTION.

Section 399BB of the Public Health Service Act (42 U.S.C. 280i-1)
is amended–
(1) in subsection (b)(1), by inserting “culturally
competent” after “provide”;
(2) in subsection (c)(2)(A)(ii), by inserting “(which may
include respite care for caregivers of individuals with an
autism spectrum disorder)” after “services and supports”;
(3) in subsection (e)(1)(B)(v), by inserting before the
semicolon the following: “, which may include collaborating
with research centers or networks to provide training for
providers of respite care (as defined in section 2901)”;
(4) in subsection (f), by striking “grants or contracts”
and all that follows through “for individuals with” and
inserting “grants or contracts, which may include grants or
contracts to research centers or networks, to determine the
evidence-based practices for interventions to improve the
physical and behavioral health of individuals with”; and
(5) in subsection (g), by striking “2014” and inserting
“2019”.

SEC. 5. INTERAGENCY AUTISM COORDINATING COMMITTEE.

Section 399CC of the Public Health Service Act (42 U.S.C. 280i-2)
is amended–
(1) in subsection (b)–
(A) in paragraph (1)–
(i) by striking “and annually update”;
and
(ii) by striking “intervention” and
inserting “interventions, including school and
community-based interventions”;
(B) by striking paragraph (2);
(C) by redesignating paragraph (1) as paragraph
(2), and inserting before such redesignated paragraph
the following:
“(1) monitor autism spectrum disorder research, and to the
extent practicable services and support activities, across all
Federal departments and agencies, including coordination of
Federal activities with respect to autism spectrum disorder;”;
(D) in paragraph (3), by striking “recommendations
to the Director of NIH”;
(E) in paragraph (4), by inserting before the
semicolon the following: “, and the process by which
public feedback can be better integrated into such
decisions”; and
(F) by striking paragraphs (5) and (6) and
inserting the following:
“(5) develop a strategic plan for the conduct of, and
support for, autism spectrum disorder research and services and
supports for individuals with an autism spectrum disorder and
the families of such individuals, which shall include–
“(A) proposed budgetary requirements; and
“(B) recommendations to ensure that autism
spectrum disorder research, services, and support
activities of the Department of Health and Human
Services and of other Federal departments and agencies
are not unnecessarily duplicative; and
“(6) submit to Congress and the President–
“(A) an annual update on the summary of advances
described in paragraph (2); and
“(B) an annual update to the strategic plan
described in paragraph (5), including any progress made
in achieving the goals outlined in such strategic
plan.”;
(2) in subsection (c)–
(A) in paragraph (1)–
(i) by striking the paragraph designation,
the heading, and the matter preceding
subparagraph (A) and inserting the following:
“(1) Federal membership.–The Committee shall be composed
of the following Federal members–”;
(ii) in subparagraph (C)–
(I) by inserting “, such as the
Administration for Community Living,
Administration for Children and
Families, the Centers for Medicare &
Medicaid Services, the Food and Drug
Administration, and the Health
Resources and Services Administration”
before the semicolon at the end; and
(II) by adding at the end “and”;
(iii) in subparagraph (D)–
(I) by inserting “and the
Department of Defense” after
“Department of Education”; and
(II) by striking at the end “;
and” and inserting a period; and
(iv) by striking subparagraph (E);
(B) in paragraph (2)–
(i) in the paragraph heading, by striking
“Additional” and inserting “Non-federal”;
(ii) in the matter preceding subparagraph
(A), by striking “Not fewer than 6 members of
the Committee, or 1/3 of the total membership
of the Committee, whichever is greater” and
inserting “Not more than \1/2\, but not fewer
than 1/3, of the total membership of the
Committee”;
(iii) in subparagraph (A), by striking
“one such member shall be an individual” and
inserting “two such members shall be
individuals”;
(iv) in subparagraph (B), by striking “one
such member shall be a parent or legal
guardian” and inserting “two such members
shall be parents or legal guardians”; and
(v) in subparagraph (C), by striking “one
such member shall be a representative” and
inserting “two such members shall be
representatives”; and
(C) by adding at the end the following:
“(3) Period of appointment; vacancies.–
“(A) Period of appointment for non-federal
members.–Non-Federal members shall serve for a term of
4 years, and may be reappointed for one or more
additional 4-year terms.
“(B) Vacancies.–A vacancy on the Committee shall
be filled in the manner in which the original
appointment was made and shall not affect the power or
duties of the Committee. Any member appointed to fill a
vacancy for an unexpired term shall be appointed for
the remainder of such term. A member may serve after
the expiration of the member’s term until a successor
has been appointed.”;
(3) in subsection (d)–
(A) by striking paragraph (2); and
(B) by redesignating paragraphs (3) and (4) as
paragraphs (2) and (3), respectively; and
(4) in subsection (f), by striking “2014” and inserting
“2019”.

SEC. 6. REPORTS.

Section 399DD of the Public Health Service Act (42 U.S.C. 280i-3)
is amended–
(1) in the section heading, by striking “report” and
inserting “reports”;
(2) in subsection (b), by redesignating paragraphs (1)
through (9) as subparagraphs (A) through (I), respectively, and
realigning the margins accordingly;
(3) by redesignating subsections (a) and (b) as paragraphs
(1) and (2), respectively, and realigning the margins
accordingly;
(4) by inserting after the section heading the following:
“(a) Progress Report.–”;
(5) in subsection (a)(1) (as so redesignated)–
(A) by striking “2 years after the date of
enactment of the Combating Autism Reauthorization Act
of 2011” and inserting “4 years after the date of
enactment of the Autism CARES Act of 2014”;
(B) by inserting “and the Secretary of Defense”
after “the Secretary of Education”; and
(C) by inserting “, and make publicly available,
including through posting on the Internet Web site of
the Department of Health and Human Services,” after
“Representatives”; and
(6) in subsection (a)(2) (as so redesignated)–
(A) in subparagraph (A), (as so redesignated), by
striking “Combating Autism Act of 2006” and inserting
“Autism CARES Act of 2014”;
(B) in subparagraph (B) (as so redesignated), by
striking “particular provisions of Combating Autism
Act of 2006” and inserting “amendments made by the
Autism CARES Act of 2014”;
(C) by striking subparagraph (C) (as so
redesignated), and inserting the following:
“(C) information on the incidence and prevalence
of autism spectrum disorder, including available
information on the prevalence of autism spectrum
disorder among children and adults, and identification
of any changes over time with respect to the incidence
and prevalence of autism spectrum disorder;”;
(D) in subparagraph (D) (as so redesignated), by
striking “6-year period beginning on the date of
enactment of the Combating Autism Act of 2006” and
inserting “4-year period beginning on the date of
enactment of the Autism CARES Act of 2014 and, as
appropriate, how this age varies across populations
subgroups”;
(E) in subparagraph (E) (as so redesignated), by
striking “6-year period beginning on the date of
enactment of the Combating Autism Act of 2006” and
inserting “4-year period beginning on the date of
enactment of the Autism CARES Act of 2014 and, as
appropriate, how this age varies across populations
subgroups”;
(F) in subparagraph (F) (as so redesignated), by
inserting “and, as appropriate, on how such average
time varies across populations subgroups” before the
semicolon at the end;
(G) in subparagraph (G) (as so redesignated)–
(i) by striking “including by various
subtypes,” and inserting “including by
severity level as practicable,”; and
(ii) by striking “child may” and
inserting “child or other factors, such as
demographic characteristics, may”; and
(H) by striking subparagraph (I) (as so
redesignated), and inserting the following:
“(I) a description of the actions taken to
implement and the progress made on implementation of
the strategic plan developed by the Interagency Autism
Coordinating Committee under section 399CC(b).”; and
(7) by adding at the end the following new subsection:
“(b) Report on Young Adults and Transitioning Youth.–
“(1) In general.–Not later than 2 years after the date of
enactment of the Autism CARES Act of 2014, the Secretary, in
coordination with the Secretary of Education and in
collaboration with the Secretary of Transportation, the
Secretary of Labor, the Secretary of Housing and Urban
Development, and the Attorney General, shall prepare and submit
to the Committee on Health, Education, Labor, and Pensions of
the Senate and the Committee on Energy and Commerce of the
House of Representatives, a report concerning young adults with
autism spectrum disorder and the challenges related to the
transition from existing school-based services to those
services available during adulthood.
“(2) Contents.–The report submitted under paragraph (1)
shall contain–
“(A) demographic characteristics of youth
transitioning from school-based to community-based
supports;
“(B) an overview of policies and programs relevant
to young adults with autism spectrum disorder relating
to post-secondary school transitional services,
including an identification of existing Federal laws,
regulations, policies, research, and programs;
“(C) proposals on establishing best practices
guidelines to ensure–
“(i) interdisciplinary coordination
between all relevant service providers
receiving Federal funding;
“(ii) coordination with transitioning
youth and the family of such transitioning
youth; and
“(iii) inclusion of the individualized
education program for the transitioning youth,
as prescribed in section 614 of the Individuals
with Disabilities Education Act (20 U.S.C.
1414);
“(D) comprehensive approaches to transitioning
from existing school-based services to those services
available during adulthood, including–
“(i) services that increase access to, and
improve integration and completion of, post-
secondary education, peer support, vocational
training (as defined in section 103 of the
Rehabilitation Act of 1973 (29 U.S.C. 723)),
rehabilitation, self-advocacy skills, and
competitive, integrated employment;
“(ii) community-based behavioral supports
and interventions;
“(iii) community-based integrated
residential services, housing, and
transportation;
“(iv) nutrition, health and wellness,
recreational, and social activities;
“(v) personal safety services for
individuals with autism spectrum disorder
related to public safety agencies or the
criminal justice system; and
“(vi) evidence-based approaches for
coordination of resources and services once
individuals have aged out of post-secondary
education; and
“(E) proposals that seek to improve outcomes for
adults with autism spectrum disorder making the
transition from a school-based support system to
adulthood by–
“(i) increasing the effectiveness of
programs that provide transition services;
“(ii) increasing the ability of the
relevant service providers described in
subparagraph (C) to provide supports and
services to underserved populations and
regions;
“(iii) increasing the efficiency of
service delivery to maximize resources and
outcomes, including with respect to the
integration of and collaboration among services
for transitioning youth;
“(iv) ensuring access to all services
necessary to transitioning youth of all
capabilities; and
“(v) encouraging transitioning youth to
utilize all available transition services to
maximize independence, equal opportunity, full
participation, and self-sufficiency.”.

SEC. 7. AUTHORIZATION OF APPROPRIATIONS.

Section 399EE of the Public Health Service Act (42 U.S.C. 280i-4)
is amended–
(1) in subsection (a), by striking “fiscal years 2012
through 2014” and inserting “fiscal years 2015 through
2019”;
(2) in subsection (b), by striking “fiscal years 2011
through 2014” and inserting “fiscal years 2015 through
2019”; and
(3) in subsection (c), by striking “$161,000,000 for each
of fiscal years 2011 through 2014” and inserting
“$190,000,000 for each of fiscal years 2015 through 2019”.
Union Calendar No. 365

113th CONGRESS

2d Session

H. R. 4631

[Report No. 113-490]

_______________________________________________________________________

A BILL

To reauthorize certain provisions of the Public Health Service Act
relating to autism, and for other purposes.

_______________________________________________________________________

June 23, 2014

Reported with an amendment, committed to the Committee of the Whole
House on the State of the Union, and ordered to be printed


By Matt Carey

note: I serve as a public member to the IACC but all comments are my own.